Braille Monitor                          July 2020

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Showing Up with Vision Loss—Even When It’s Hard

by Maria Johnson

From the Editor: Maria Johnson is a blogger who has created the blog Girl Gone Blind. She is the mother of two awesome children, and she found herself having to confront vision loss and legal blindness within seven months. Maria is also a group fitness instructor, blogger, podcaster, and speaker who lives in San Diego, California.

In this blog post she is speaking to a friend who wants to know how to cope with vision loss. Although I wish she had suggested that her friend get involved with the National Federation of the Blind, I think her advice is much like that which we would give. Hiding is not the answer; self-isolation in the familiar is not the answer; begging off for social appointments is not the answer; simply staying in a state of feeling sorry for oneself is no answer. I hope you enjoy her writing as much as I do:

When I’m asked to speak about how I pulled myself through the hard stuff after my vision loss, I tend to start flipping through my mental photo album: an album full of throwbacks, flashbacks, and emotions. It’s a bit like Facebook Memories, with photos reminding us of the good, the bad, and the fun moments we had during a specific year. My album is spectacular, and it tells my story.

Losing most of my vision at the age of fifty was NOT easy. It was hard sometimes. Even if I made this going blind thing look like no big deal—I was devastated by my diagnosis. I often felt debilitated by how hard it was to acknowledge, adjust, and accept this new way of “seeing” the world.

However, there was one thing I did (and still do) consistently during that time. I chose to show up with vision loss every day—even when it got hard.

In a constantly changing world, we can’t rely on the perfect moment to unveil itself and wait for us to decide what to do. If opportunities, invitations, or events present themselves, we need to take advantage of them, or else they will pass us by—possibly leaving us with regrets, guilt, and a victim mentality.

There were many, and I mean MANY, moments where I had to make the choice to show up or not. As my vision declined, the idea of going out to my daughter’s high school swim meets, my son’s college symphony performances, social events, Girls’ Night Out, teach my group fitness classes, or attend a support group for the blind was…totally…overwhelming. A big part of me did not want to show up to anything. In my mind, staying at home was so much easier mentally and physically. Home was where I was safe and comfortable. Home was where I didn’t have to figure out how to navigate and wade through the rough waters of the outside world with vision loss. Everything seemed so hard, and I was not having any of it. (Insert tantrum here.)

Yet, a small part of me knew that I should show up to my new, unexpected, upside-down, and heavily scheduled life—and deal with the scary stuff.

Well actually, showing up was not what I should do. Nope. Showing up was what I NEEDED to do! I needed to show up to my kid’s sporting events and music performances. I needed to show up to teach my group fitness classes. I needed to show up to social events, happy hours, Bunco and Girls’ Night Out with my BFFs. I needed to show up to find support and connection with others in the LHON [Leber’s Hereditary Optic Neuropathy] and blind community. I needed to show up to learn how to do the everyday things I visually took for granted in the past. I needed to show up to figure out how to survive this overwhelmingness. And, If I kept choosing to show up, that meant I was not choosing to give up.

But, truth be told, I wasn’t always gung-ho about this “showing up” thing. What most people never knew was that I circled the drain many times. I was so mentally weak. I wanted all my torment and tears to disappear for good. And each time I felt this pain, a wee rational voice in my head would pop in and say “Stop!” A slam on the brakes kind of stop—keeping me from spiraling down the dark drain, again. And still, every day, I would ask the universe, “How the hell am I supposed to do this?” I was at a loss.

I kicked. I screamed. I fell. I cried. I was afraid. I panicked. I fought. I got stuck. I grieved. I stumbled. I raged. I paused. I froze. I shook. I dug deep. I listened. I broke down. I grew.
And I slowly began to show up—making my way through the muck and the misery-pulling myself through the hard stuff. I had more life to live, even if it was different from all that I knew.
Okay, so what can I tell you about the process behind showing up with vision loss? A LOT! And all you people standing in the back, come up front. You’ll want to hear this!

Choose to show up
Just show up. It’s that easy, right?! Not really. Showing up with vision loss isn’t always a piece of cake. Wait. What? Is there cake? I’ll show up if there is cake!

Choosing to show up is going to be uncomfortable and scary at times--like being chased by a swarm of murder hornets scary! Yep. It just will. You may think, “Why should I choose to deal with discomfort instead of denial? Why should I choose the scary instead of the status quo?” The answer? Because that is what it takes to gain (and reinforce) the confidence and courage you may have lost when vision loss came into your life.

Expect it to be hard

Unexpectedly losing your vision later in life is a game changer, but not game over. However, don’t plan for it to be an easy change. Expect the change to be hard, and when it is, do it anyway. This is where we need to get good at understanding our difficult emotions.

Naturally, emotions like fear, discomfort, and angst, are ones everybody tries to avoid. We need to discover why these emotions bubble up when they do and learn how to sit with them. Feel them. Talk about them. Instead of resisting or stuffing them down with that “piece of cake” I mentioned earlier. Umm, I won’t judge, I’ve done it too. Anyhoo…if we seek to understand our heavy emotions (not eat them), we can let them go. Letting go of what weighs us down will free us up to handle the next hard thing with strength and grace.

Hold on to your “whys”

If we know and hold onto our “whys,” then we’ll be more apt to show up, even when it’s hard. My whys are my kids, my GGB [blog] goals, and my wildly “untamed” future, which includes cake. Hey, don’t be all judgin’ ME now, sweetheart! A girl needs her cake every now and then. These “whys” are more important than the pain of the past. Sometimes we need to step back and look at how and why we have made it this far—right to this very moment. Think about it. Pretty amazing, right?

Coach Yourself

Coach yourself with a pep talk, the same supportive pep talk we would give a dear friend if they were in our shoes. Something like, “I know you don’t feel like it, but you’re worth it. I know you’re strong enough and brave enough to do this!” Take a breath, and repeat it if you need to. If we don’t believe we can show up and do big things, who else will?

When and where we show up with vision loss, or any other disability, matters. Because showing up means we’re not giving up—even when it’s hard.

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